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Monday, October 31, 2011

Last night was the first night that Abigail, Jesse, and Jani were back in their own home as a family unit. They had stayed at Jani's family's house the previous one. Jani's family has been a great support to them over these past months. Such a blessing!

I was able to Skype with Jesse and Abigail yesterday and it was a joy to see her smiling face with that adorable tuft of red hair. Jesse had expressed concerns regarding Abigail adopting new characteristics and preferences since this last hospital experience. In some ways the baby they have now is very different from the one that went into the hospital. I think it will be a period of adjustment for all of them as they try to settle back in to some sort of schedule as well as understand Abigail's new needs and behaviors.

Thankfully last night was much better than her first night out of the hospital. Abigail, and consequently Jesse and Jani, had a really good night. Today Abigail has seemed very happy. So happy to see her in such a typical infant setting: surrounded by toys, fingers in mouth, and in a cozy environment - her own home.

Friday, October 28, 2011

Abigail is doing great today. She has had a few pain crying spells, but overall has been happy. She's been talking up a storm. The nurses told Jani that she was talking all morning. I am sure that was such a relief for Jani and Jesse to see their happy baby return. Jani heard a rumor that Abigail might get to go home tomorrow. I will be anxiously awaiting that news!

Jani just sent me this photo of the sleeping angel snoozing peacefully. She said that they are getting ready to move her out of the ICU! I hope she gets her own window again:)

***UPDATE Oct 29 10:31 am from my phone***
Fantastic news...Abigail will be going home today!!! This has to be my most favorite photo of Abigail. It brings me such joy to see her glowing with such life. Her little eyes sparkling, her flush cheeks, and engaging smile. What a site this must be for Jani and Jesse. Jani said that Abigail won't stop talking.
....
Just got a text while I was typing this...
Abigail is free! She has been released from the hospital!!!!

Wednesday, October 26, 2011

It is never a good thing to hear a long pause after you ask someone how they are doing. I just received an emotional phone call from my mother. Abigail is in desperate need of prayers right now. The past two days have been very hard on her and consequently on my brother and my sister-in-law. Despite her intermittent smiles during the day on Monday, Abigail continued to cry out in pain. They thought it may have been gas pain and continued to give her Tylenol. Yesterday and today the pain increased as Abigail continued to cry out in pain.

Today as a result of the morning routine X-ray, the doctors discovered that there is something wrong with Abigail's pulmonary artery. It is either swollen which will require additional waiting to see if it goes down or it is too small and unable to handle the flow of blood which would require the doctors to once again do surgery. Hopefully in six hours they will be able to do an echo-cardiogram to determine the exact problem. Abigail will have to be sedated as they will also be doing an endoscopy down her throat.

The doctors are estimating that this problem with her artery has been causing great pressure and pain to poor Abigail's head, amongst other problems.

As you can imagine this is devastating news for our family. We ask for your immediate prayers in aiding the facilitation of another miracle in the life of Abigail. We thank you for your love and investment in the life of this sweet little baby.

***UPDATE Oct 26 9:28pm from my phone***
From the echo-cardiogram they discovered that there is a vein bringing deoxygenated blood back into the right atrium, which in Abigail's heart pumps out oxygenated blood. This could be an explanation as to why her oxygen saturation levels have been low.

Tomorrow they will be doing another surgery. From what I understand of the surgery and its purposes, they will be going through her femoral artery to close off this vein to see if this will raise her oxygen saturation levels. They will also be checking pressure levels in different chambers of her heart to assess if an additional surgery may be needed soon. As I am uneducated in all the intricacies of the heart and its functions, I am a little unclear as to what all of this means. What I do know is that Abigail will be undergoing another surgery tomorrow and continues to need our prayers. Thank you dear friends and family!

***UPDATE Oct 27 3:23 pm from my phone***

After several delays Abigail finally left for surgery. She was originally scheduled for surgery around 10 this morning. Poor Abigail has to fast six hours prior to her surgery. Since they have postponed it several times today, Abigail has had to be without food all day long.

I spoke with Jani this morning and she sounded great!...very positive and calm. She said that they have been trying to make things seem a little more like home with toys, playmats, and going on walks in her little wagon. The nurses adore Abigail and enjoy coming in to play with her.

Jani also explained a little more about Abigail's surgery and sent me a little diagram trying to show the problem that the surgeons are trying to fix. This vein, called a ligament of Marshall, normally does not have a blood flow. For some reason it has started to bring deoxygenated blood from the superior vena cava into the left atrium mixing both oxygenated and deoxygenated blood causing Abigail's oxygen saturation levels to be low. The surgeons are hoping that by putting a coil on the vein they will prevent further blood flow and this will raise her oxygen saturation levels. Hopefully this is the only problem and the pulmonary artery is only swollen and not too small to handle the blood flow.

Jani told me that they normally check the pressures of the heart chambers during the surgery Abigail just had, but because they didn't want to be so invasive they decided not to do it then. They will be doing it this time. Instead of entering through the femoral artery, they will be going through arteries in her neck and side.

Her surgery will last a couple of hours. Hopefully they will know right away if it was successful. Thank you all once again for your continued prayers and support.

***UPDATE Oct 27 10:34 pm***

Forgive me for the lateness of this update.

At 5:30 pm Abigail came out of her procedure, a declared success by her oxygen saturation statistics which immediately improved. The surgeons were able to stop the blood flow in the vein, the ligament of Marshall. The pulmonary artery seemed to be a non-factor in the surgery. Kathy, Jani's mother, did confess that it was "pretty frightening to see her afterwards. She seemed to be gasping for breath but they assured us that it was her Laryngeal Malaysia problem in her throat and not her breathing." Kathy explained this term to me, which I was completely unfamiliar with. It is her damaged larynx that collapses and causes her to breath and snore very loudly. "Apparently we all have that vein. We must use it in utero but it is supposed to close off shortly after birth. Hers, on the other hand, opened up more and more because of the pressure from the Glenn." The Glenn Procedure is the name given to the surgery Abigail had last week. This gasping has caused quite the scares for Jani and Jesse and especially little Abigail, whose eyes are wide with panic when she can not catch her breath.

After the surgery Abigail was brought back to the CICU. Kathy, Jani, and Jesse had to wait an hour to see her because they kicked them out for staff rotation. Seems so unfair.

After 15 hours, Abigail was finally allowed to eat. Poor little angel! Kathy reported that "they just kept pushing back the time for the procedure. It was really frustrating and soo tough on Abigail. She is so incredibly sweet and patient."

I pray that she will now be able to heal and that this may be the close of this chapter of her surgeries until the next one, projected at age 3-5. I look forward to seeing her smiley, wiggly self very soon. Thank you all again for your prayers in behalf of Abigail and our entire family. Jani told me today that she feels like the prayers of everyone in her baby's behalf has been the reason Abigail has done so well in recovering. Thank you to all!

Saturday, October 22, 2011

One last photo to end the day. One I have to say that is a favorite of mine. To see my strong brother gingerly hold his angel baby girl. To see him stare down at her longing to be able to protect her from all that she is going through. If you know Jesse, you know that he is a protector. We as sisters have benefited from that trait many times. He watches. Oh boy, does he watch. And when he senses danger, he is there...quickly. He has never been afraid to step in and do all he can to steer us from any potential harm. I know that this instinct is crying out in his mind and yanking at his heart, that he can not take this pain from Abigail. That he could not have prevented it. But what he can do, he has done...be there by her side. Hold her. Love her. And love her mother.

No words describe the sacred occasion when a new father holds a baby daughter in his arms for the first time. This year three of our sons have become new fathers of baby girls. As I watched our rugged, strong, rugby-playing son, Jon, hold his first baby daughter in his arms, he looked at her with a reverent tenderness, and then he looked at me with an expression that seemed to say, “How do I raise a girl?”...

The answer has been taught by the Lord’s prophets. It is a simple answer, and it is true—“The most important thing a father can do for his [daughter] is to love [her] mother.”1By the way you love her mother, you will teach your daughter about tenderness, loyalty, respect, compassion, and devotion. She will learn from your example what to expect from young men and what qualities to seek in a future spouse. You can show your daughter by the way you love and honor your wife that she should never settle for less. Your example will teach your daughter to value womanhood. You are showing her that she is a daughter of our Heavenly Father, who loves her.

Such truth! This Jesse can do, does, and will continue to do. I know that to be true.

As Jesse and Jani have labored through this trial together, I know that their love for each other has grown. What a blessing to Abigail to have parents who are united in their faith and their love. As a child, this unity in your parent's marriage is something almost tangible. A type of security blanket. I was blessed with this wonderful covering as a child. I pray my children feel this in our own home. For Abigail, it will provide a comfort and a safe haven for her as she continues to heal and perhaps becomes discouraged regarding her limitations. She will see the love of her Heavenly Father for her manifested in the love within her own home.

***UPDATE Oct 23 9:09 pm ***

I received photos from Jani and my mother today as well as a darling little video of a happy, active baby Abigail. {I can't seem to get the video to load, so I'll try again later.} Jani reported this morning that they were concerned that she may have an infection so they were running some labs.

My mom writes:

"She's feeling better today as you can happily see!! Her stats have fluctuated quite a bit today which the nurse couldn't figure out why. But they're thinking that with her activity that the monitor on her little foot and hand cannot measure accurately. But when she's sleeping or resting its in the lower 80s which is good for her!! So we're happy to see her smiling and kicking!!"

I will try to get that video up on here so you can view it. Seeing her busy little body is an instant spirit lifter!

***UPDATE Oct 24 5:34 pm from my phone***
More and more smiles from our little miracle baby! I'm teasing you all by telling you that my mom sent me an even cuter video of Abigail today:). {Would love some help from all you tech geniuses on how to get videos from my IPhone to Aperture to Blogger. Believe it or not, nothing on YouTube}. She is sitting up in her bed smiling and kicking away! Such a sight!! The nurse told Jani that she was doing so well that if she didn't have a little cold they might have released her tomorrow. Such a miracle after only a week! Here's your Abigail fix for the day:

Friday, October 21, 2011

This morning I received a despairing text from Jani. She informed me that they decided to keep Abigail in ICU one more day. They would be removing two of the chest tubes but leaving one in. "She has been waking up in a panic. She has a hard time coughing due to the pain. She then begins to close her airways which causes her to panic more. Her poor eyes plead for help. It breaks my heart. All we can do is put our arm under her head and rub her face. When she does all of this all of her stats go down. Today they tried suctioning her throat and her nose to see if that would help. Suctioning her nose gave her a bloody nose. Our poor baby! She is a true fighter and has such a strong spirit."

Jani did tell me that besides her panic attacks, she is healing well. Jani said that all the doctors have called Abigail a superstar. "There are some families here that have children with similar diagnosis as Abigail and have had the same surgeries that have been in the hospital for months. Abigail truly is a miracle."

Later on today I received this photo from my mother. The chest tubes were removed so Jani was finally able to hold her!!! Abigail's firm little grip on Jani's finger seems to be communicating, "Don't let me go." Jani's face is focused but you can read the weight of concern and pain she feels for her child. I have no doubt she is wishing that the pain was on her and not Abigail. I pray she may continue to feel the optimism of these doctors as they cheer Abigail on despite the emotionally draining effects of Abigail's panic attacks.

And as she sees these little tear filled eyes, she may know that this is just a moment and will feel the outstretched arms of her own Heavenly parent wishing to comfort her in this, a great refining moment in her journey of faith. Jesse and Jani, your example of unwavering faith will stand as a witness for your children for generations to come.

***UPDATE Oct 22 2:53pm***

Today the remainder of Abigail's tubes were removed. Jani's mother sent me a photo after they took them out and I have to say that I could barely glance at it, with her exposed incision and stitches. Forgive me for not posting it. It was too much for me to handle right now. I am sure that I should see it as an outward sign of a miracle, but it is just so difficult to see this baby's beautiful skin interrupted by such a horrific looking flaw. It seems harshly out of place.

On a more positive and grateful note, Abigail was just released from ICU and now has a new room on a regular floor. The look of this room has a completely different feel, with her own window and far fewer monitors...a far less intense feeling. A feeling of healing.

Thursday, October 20, 2011

Imagine being in a deep sleep, only to awake to a foreign place... not a comfortable, familiar room, but one full of beeping machines and cords restricting your movement. Poor little Abigail woke up very confused, upset, and hungry. Seeing the familiar face and feeling the familiar touch of her mother soon calmed her down. Such a trial for Jesse and Jani not to be able to hold and comfort her. They were not even allowed to sleep in the room with her last night because she is in the CICU. Restraints had to be placed on Abigail because she pulled out her breathing tube. It kind of makes me chuckle that she has that much fight and energy in her already.

The nurse told Jani this morning that Abigail was doing so well, and at this rate she may be out of the CICU tomorrow and into a regular room!!! That is fantastic news. I have received reports throughout the day that she continues to do well. Such a blessing.

Her little eyes in this photo seem to pierce your heart, a look of pleading for relief of her restraints, a longing to be held. It just makes me want to pick her up and hold her close.

It is difficult to see her with all of these cords and the bandage over her fragile little chest. I am grateful to my sweet friend Desire who reminded me that each one of these wires and tubes are helping Abigail get even stronger. Even stronger. I love that. Abigail is strong! A champion, a fighter, strong-willed, and full of life, just like her Mommy and Daddy. Even stronger. These wires and tubes are helping her along, to assist her body in becoming fully functioning with all its new repairs. What a miracle that is!

***UPDATE Oct 20 7:58 pm***

As the day continued, little Abigail had a more difficult time. My mother said it was one of the hardest things she has ever witnessed. Although Abigail was able to rest, when she awoke she cried out in pain and protested to be held for long stretches of time. She would look to her parents longingly with her sad eyes. You can imagine the heartache those cries and stares caused both Jesse and Jani today, hearing your baby cry out to you and stare into her eyes not being able to fulfill her need. These crying fits raised her blood pressure, caused her to have shortness of breath, and lowered her oxygen saturation which were of great stress to her newly repaired heart and body. You can see in her coloring in the photo below how red she became from these episodes. She has been on a low dose of morphine for the pain, but it is not helping enough. Tonight they will sedate her so that she can rest uninterrupted. The nurse reported that she believes that the pain is due to Abigail's chest tubes which drain the fluid around her heart as well as a severe headache caused by the surgery.

The good news is that she will probably be released from the ICU tomorrow to a regular room. The nurse told my brother today that in her recollection this is the shortest time any baby who has had this surgery has been in the ICU. The other blessing will be that these chest tubes will be removed tomorrow which will allow Jani to be able to hold her! Oh arms never wanted to hold so deeply!

Please pray with me that Abigail will be able to be calm and feel comforted so that there will be no added trauma to her healing body. Please pray for strength and peace of mind for Jesse and Jani as they stand by Abigail's side.

Wednesday, October 19, 2011

Your baby blues
So full of wonder
Your curly cues
Your contageous smile
And as I watch
You start to grow up
All I can do is hold you tight

Knowing clouds will rage in
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

As I saw these loving photos of Abigail wrapped in snuggly blankets and encircled in the arms of her adoring parents, it reminded of a powerfully beautiful song called "In My Arms" by Plumb. {You can listen to it by selecting it in my playlist in the right hand column}

Although nothing makes you feel that your child is as safe as when they are in your arms, as your children grow up life necessitates that you let them go, whether to school, a neighbor's home, a party, a mission, or in the hands of a trusted surgeon. We must remember what the Lord has promised us,

It is 8:20 am and Abigail has just been taken in to surgery. We all trust in the Lord to encircle our sweet Abigail in his arms of love and safety.

***UPDATE Oct. 19 11:15 am***

I received a text from my brother Luke who was able to travel to Utah with my mom and sister to be there for the surgery. He said that the surgeon told them that surgery could take up to 6 hours. The nurse just came out and told them that the surgery was going well but that they were just starting the repairs to Abigail's heart. Continue those prayers! Thank you.

***UPDATE Oct. 19 2:26pm***

I am still waiting to hear if Abigail has come out of surgery. My mother texted me about two hours ago that Abigail had been stable during the entire surgery so far and probably only had an hour to go...one hour later...no update...2 hours later...still no update. Anxiously awaiting word!

***Update Oct 19 3:15 pm from my phone***
Abigail is out of surgery and in the CICU. We are so grateful that it was successful although it is difficult to see her in this state. Kathy, Jani's mom, sent me this photo. She said it feels like starting all over and how her heart is breaking! I felt a rush of gratitude but also a crushing of my heart seeing her surrounded by all that equipment.
She will possibly need to be in the hospital for 2 more weeks. They are currently working on getting her blood pressure down. Please continue to pray for her little body. Thank you dear friends and family members. I know your strength has been felt today.

***UPDATE Oct 19 4:55 pm***

Abigail is beginning to move around a little bit. I can only imagine that it will become increasingly difficult to keep all these cords and tubes intact once she is back to her energetic self. Here is an incredible photo that Kathy sent to me, the 11 monitors {8 in front, 3 in back} regulating all of the medicines for Abigail, each one attached to a syringe. Poor little thing.

Tuesday, October 18, 2011

Knowing that this day would arrive for Abigail has not lessened the impact of its reality for Jesse and Jani. As their love has increased and as they have watched their sweet daughter's personality emerge, the coming day seems even more difficult. A firm trust in the will of our Heavenly Father is what calms their own hearts.

Today Abigail is in the hospital in preparation for her second heart surgery tomorrow. At 3 months of age, her oxygen levels have decreased to levels the doctors did not expect until she was 5 to 6 months old. Today she is undergoing a X-ray and a few labs in order that her blood will be ready for her when she goes on bypass tomorrow. Jani and Jesse will also be meeting with the surgeon and the doctors. It is anticipated that Abigail will be coming home tonight and then admitted into the hospital tomorrow morning for her 7 am surgery.

Friends and family members, we come to you again to feel of your strength, love, and faith during this tremendous trial of faith. We would invite any of you who feel inclined, to participate in a special day of fasting and prayer tomorrow as Abigail is in the hands of these fine surgeons and in the Hands of the Supreme Surgeon. {read more about the purpose of fasting here and here} We as a family have experienced many miracles over the past few years, and know that another one can be expected through the great mercy of our Savior Jesus Christ.

In order that I gain a better understanding of Abigail's heart defects and the procedure which Abigail will be undergoing tomorrow, Jani graciously took time to type up a summary of them for me:

"Abigail has many heart defects. Here are the main ones.

L Transposition- heart is backwards

Hypoplastic Left Ventricle- left ventricle is underdeveloped

Tricuspid Atresia- No or underdeveloped tricuspid valve

Pulmonary Atresia-No or underdeveloped pulmonary valve

Dextercardia-the heart is on the wrong side of the body

So the surgery that Abigail is undergoing is the 2nd step to a three surgery process. I am going to write down all three surgeries since that is how it is talked about in the book. Everything is going to be a little different for Abigail since her heart is not only on the wrong side, but is backwards. This explanation listed below isn’t EXACTLY what they are doing, but close to it.

Hypoplastic Left Heart Syndrome occurs in about 1% of all Congenital Heart Disease.

The left ventricle (LV) is hypoplastic, meaning it is underdeveloped or not functioning. Essentially, the LV is not functional because the valves leading into and out of the LV, the mitral and aortic valves are severely stenosed (tight), or atretic, meaning impassable or not allowing any blood flow. In addition, the main route out of the ventricle, the aorta, is hypoplastic (THE AORTA FOR ABIGAIL IS FINE DUE TO HER’S COMING OUT OF HER RIGHT VENTRICLE, A TRUE MIRACLE).

Within days or hours after a definitive diagnosis is formed, the baby will go for the first surgery, called a Norwood procedure (THIS WAS DONE WHEN ABIGAIL WAS 4 DAYS OLD). The pulmonary artery is separated from the heart and connected to the small aorta. This enlarges the aorta and allows boh oxygenated and deoxygenated blood to get to the body via the open pulmonary vavle. Additionally, a modified Blalock-Taussig shunt is placed. This Gore-Tex tube is placed between the subclavian artery, the artery that runs under the collar bone, and the pulmonary artery to allow blood flow from the baby’s upper body directly to the lungs, bypassing the heart altogether. From the lungs, blood flows to the heart to be pumped out to the body, carrying oxygen. This allows the baby to grow out of infancy with more oxygenated blood reaching the body. The blood flow through the pulmonary circulation allows the pulmonary arteries to grow better, in preparation for the next surgery, which will be at five to eight months of age (FOR ABIGAIL, 3 MONTHS OF AGE).

At this time, the Glenn procedure is performed. The Glenn procedure connects the superior vena cava (SVC) to the pulmonary artery, after the BT shunt is separated. This allows even more blood flow through the pulmonary arteries to the lungs. It also serves as a basis for the final surgery, the Fontan procedure. The Fontan procedure takes the blood through the inferior vena cava (IVC), directly to the pulmonary arteries with the SVC blood. All the blood then goes to the lungs for oxygenation before going to the heart for pumping to the body.

This paragraph was taken from a book called “It’s My Heart.” It was given to us at the Hospital."

As I read this paragraph and think about all of the repairs and reroutes that are required to fix little Abigail's heart and body, I am again in awe of the miracle of this body that you and I have, a gift from a loving and omnipotent God. The intricacies of its functions and the marvel that so many of us are born healthy is incredible. I also know that every one of us are not whole in so many regards and that the power of the Healer of our hearts and souls can mend all that is broken. The greatest miracle of all.

To read more about Abigail's journey click here or on the 'Abigail' label in the right hand column.To see the video "Hands" of Abigail's first days click here.

Monday, October 10, 2011

What a joy to have cousins! And aren't these the cutest bunch of cousins you have ever seen. I am sure you can imagine the amount of photos that were taken to find one in which the majority of the kids were looking simultaneously. What you cannot even begin to imagine is the amount of yodeling, yelling, Lukabic {my brother Luke's own intense language}, drum rolling, dancing, and arm flailing that went on behind the scenes from parents and grandparents to capture the attention of these mostly willing subjects. Perhaps you can relate.

The lightning quick hands of mothers reapplying headbands, taking hands off of faces, tucking hair out of eyes, and in our case, retrieving escapees and returning them back to their assigned black square. This floor is stunning, especially adorned with such darling accessories. And yes, this is my mother's exquisite home. And yes, she has a white sofa even with eleven grandchildren.

Each child {besides the sleeping babes} is on the step representing their age

{well, at least that was how they started:)} ...0,1,3,4,5,6,9

Look at all these adorable faces...

and toes.

Felicity was delighted to see Mommy way up high taking her picture. If only everyone noticed me up here with the camera. Yoo-hoo kids, look up here. Up here!!

The occasion for such a celebratory session...

the meeting of dear sweet cousin Abigail.

It was a touching experience having all of the cousins be together and meet little Abigail, a baby they have been praying for at every prayer throughout each and every day. They had grown to love her before they had ever met her. Such genuine love! A love fit for the best of cousins.

Our family has been greatly blessed with the arrival of two beautiful girls:

Abigail Elizabeth

and Charlotte Mae

As a family we will be once again asking for your prayers in behalf of Abigail Elizabeth. She will be undergoing her second surgery sooner than expected, on October 19th. I will of course follow up with more details as they arrive. Please keep Jesse, Jani, and Abigail in your hearts and prayers as they prepare for another jolting experience in their fresh life together as a little family.

***UPDATE Oct. 10 10:25 am***

Your heart belongs to us all, Abigail!!

Today Abigail will be intubated for her eight hour MRI in preparation for her second heart surgery scheduled for October 19th. Jani is praying that all will go well today so that Abigail will not have to stay overnight in the hospital. She sent me a text message this morning with this darling little photo and the subject line, "looking cute for the drs." How could these doctors' own hearts not just melt when they see this package of cuteness looking up at them. Truly Abigail, your heart belongs to us all.

***UPDATE Oct 16 7:56 pm***

Jani said that Abigail was a champ for her MRI and was able to come home that night! The color in her skin has become more blue due to her oxygen levels becoming lower and lower. These decreasing levels are the reason that the surgery is needed a lot sooner than expected. This coming Tuesday she will go to the hospital once again for some final tests and labs before her surgery on Wednesday. We would so appreciate your prayers and thoughts on her behalf once again. Thank you.